Informed choice and the breast cancer screening programme

[cornishgirl]

Hi Laura c ,
Im so sorry to hear about your friend and my heart truely gos out to her and her family, this is a cruel vile disease and there seems to be no ryme or reason to it, i have also lost many friends that ive met since my own dx, many here on BCC, some of them with very good prognosis at Dx , each of us is different ,and each and every cancer is different ,also each of us responds to treatments differently sometimes.

I just wanted to clear up what i meant when i said i dont think anyone is "Lucky" to have Breast Cancer , Breast Cancer is thank goodess very treatable but it also has no cure, most people will be "Lucky" (though i realy dont like that word) and hopefully will never have to deal with breast cancer again after inital treatment, However, there are also many other people who go on to get reocurrences or sometimes secondaries, or as in my case even a 2nd primary at 5 yrs, some people can get recurrencess even yrs later, even 10,20 yrs later , (breast Cancer does not have a 5 yr all clear like some other cancers) so ALL of us ,whatever our Dx still will live with the Sword of Damocles" in our lives after a BC DX , and none of us will know for sure that we are cured untill we grow old and die of something else. That unfortuneatly is the realities of this disease.

I am glad if anyone can feel after Breast Cancer that it was just a blip in thier live's and that they can close the door after treatments, and i mean that genuinely ,most people learn to put their fears in a box and only let them out occasionaly so as to not allow it to affect their future lives, but it often takes a long time to regain trust in your body, and its not always easy for most to look on their dx as a blip as many people are left with long term SEs, body issues ,daily reminders of their disease, and worst of all fears for their future.
It does get better in time for most people ,and most people will adapt to their new normal and for the most part put BC behind them and hopefully have no further problems ,but because there are no gaurentees with this disease for anyone ,i would never ,no matter what the inital Dx class anyone as Lucky. There is an exelent artical written by Dr Peter Harvey , After Treatment Then What" which explains exactly most peoples feelings after a Dx of Breast Cancer and the Sword of Damocles it leaves behind.
http://www.cancercounselling.org.uk/northsouth/extra4.nsf/WebResClient/1761049276601BD68025735B00604...[

Am sorry if anything i said caused any upset, it realy wasnt my intension, but i think no matter how early the Dx it still shouldnt be thought of as lucky, lucky are those who will never have to deal with Cancer in their lives.
All the very best to everyone
Linda x

[laura_c]

For the record when I said lucky I meant lucky that cancer has been discovered and can be treated. As long as you are being offered treatment you are in a fortunate place. I have a friend who has been told there is nothing they can do....she is in her 30s with 2 young children. Noone wants to be found to have cancer and go on this terrible journey. But there is light at the end of the tunnel and a door can be closed on it. My mum is 10 years post diagnosis...she was freaked out about treatment being offered to her but did her research (actually asked for diff chemo drugs to what were originally offered and was given the alternative) and received excellent care and all through the journey we took comfort in the fact that treatment was being offered and a path through all this. My mum is in a much better place now than she was before diagnosis and often says its changed her life for the better as now she really appreciates every day and has said goodbye to stress (retired early) & has a new partner. She was a hardworking, single parent before all this. Her life and outlook has completely changed...she has been an inspiration to me and so when I went to get a lump checked out I was worried but hopeful that if it was bad it can be dealt with and I would look back on this as a blip....here I am 2 weeks after a double mastectomy and although in discomfort feel relieved that I found this and got rid of it...I was leading such a busy life at work and always cancelling doctors appointments due to deadlines. Im too young for routine screening. I have recieved excellent care and could have turned down treatment but I wouldnt take that risk when I see through my mum that there is life after this horrible disease.

[cornishgirl]

Ive never realy understood the contraversy over the screening program, if something is found in the breast that shouldnt be there then surely it is best to get it out. Otherwise whether DCIS or certainly Invasive tumours you are potencialy liveing with a ticking time bomb. Invasive cancer can spread very quickly ,DCIS is an early indicator or sometimes refered to as pre cancer and has the potencial to turn invasive ,so why take the risk.
My first breast cancer i luckily found myself, i had a definate lump , after surgery the tumour was found to be surrounded by DCIS ,i was below the screening age so wouldnt have had the oppertunity to have this tumour picked up at the DCIS stage meaning much more aggressive treatment , surgery/chemo/rads and hormone therapy.
My 2nd breast cancer (opposite breast ) was picked up at my discharge mammo 5 yrs later, screening at that time in my hospital was every 2 yrs after a BC dx ,so while i had a clear mammo in 2010 by the time i had my next mammo in 2012 i again had a aggressive invasive tumour again surrounded by DCIS ,and again needing more aggressive treatment surgery/chemo/rads/herceptin and hormone therapy. I often wonder had i been able to have a yrly mammo (like they do in the states) and also do here in the UK now after dx but only for 5 yrs, that my 2nd BC may have been picked up quite possibily a yr sooner before it had become invasive and would have then required far less treatment.
I will never know of course for sure, however, neither myself or my breast clinic on physical exam at discharge could find any lumps ,the tumour was only found on the mammo even though it was 2.5 cms in size ,so a week later i got the mammo recall and was back on the BC rollercoaster again!
I think what im trying to say is, not everyone has symptoms, even after a previous Dx , i agree with the other ladies that personaly i think the screening program in the UK is inadaquate and should be offered to ladies much earlier than 50 or even 47 which i believe its now going to be, and certainly it should be yrly for life for anyone who has already been dx with breast cancer before. I personaly will never go on a screening program that only offers 3 yrly mammos now , but will pay privately for yrly mammos instead at discharge.
Re over dx , well i never realy did work that one out, and i dont know how anyone can say with any certainty that it is over treatment, because unless anyone is willing to "wait and see" which i doubt many will ,its an impossible claim to make and prove .
I suspect all the fuss about screening and over treatment is far more to do with money saveing than anything else.
btw, i dont think anybody is "Lucky" however early ,or however their cancer is found , any cancer ,nomatter how early has the potencial to spread and also the potencial to kill.
Linda

[poemsgalore]

Just to put in my two pennyworth. I was never 'told' what was best for me. I was given options all the way through. Did I want WLE or MX with SNB. After surgery, when told I had grade 3 with nodes affected, I was 'offered' chemo but didn't have to have it if I didn't want it. I took it and was very glad I did when I found out three quarters of the way through that I had vascular invasion. After chemo, I was offered rads. I asked what my risk factors were for a recurrence. Less than 20% in chest, 50% in lymphs, for which I could have ANC if I wanted. I refused RADS on that basis, and also because of a lung disease. So I now have 5 years on Anastrazole as I was 100% ER positive and 70% PR positive. The point I'm making is, we can never be certain just what the medics will find as time goes on, and a diagnosis can change for the better or worse.
The very best to you, whatever decisions you make.

Poemsgalore

[CJM]

PS I have changed my username, I am the on who started this thread.

[CJM]

I can't see how to attach a file, otherwise I would attach the article from Scandinavia (it's by Zahl, Goetsche and Maeheln, 2011) for Chascat. But this is only one thing I have read - there is also the Cochrane Report (2013) from the Cochrane Collaboration - and internationally respected medical research collaboration, and even the UK Independent Review on the Screening programme (2012) expresses far more doubts about its benefits than are relayed to women at the point at which they are invited for a mammogram. There is also a book by Profesor Michael Baum (emeritus Professor at University College London), in which he expressse doubt about the current screening porgramme as it stands. I assure you, I am not just reading newspaper articles!
I had no intention of upsetting people and everyone must make their own choices. For the record, I will be going for WLE and SNB, but have asked to see another surgeon in the hope this one will at least take my view into account an dnot just tell me what's good for me without listening. Clearly I have reacted in an unusual way, but I was just trying to find out if there was anybody out there who feels as I do. No one so far!!But please don't call me lucky just now - maybe in time I will come to realise my "luck" - but none of us writing on this forum are lucky, and I don't certainly feel that I am.
All the very best to you all.

[kes_1]

I also agree with Black swan re: insufficient screening, I was diagnosis with breast cancer last year that had spread to lymph nodes and got invite for nhs breast screening programme last week.

[meconopsis]

Hi ElizabethD,
I believe that we have a right and need to make informed decisions about any treatment, what I also know is that we( Humans) do not always adhere to the what is expected when it comes to treatment. We are individuals, we react have side effects, our bodies repair heal or not individually. We need to know ourselves, our medical history and our families medical history as best we can to help those who are treating or proposing to treat us.

I also know that for me the best person to offer advice is the person/persons on the front line seeing and treating the women who present with breast cancer, by all means get a second or even if you must a third opinion.
There is evidence based research, but for almost all there will be research with opposing findings and outcome and that is the crux of the matter its research its not a definative answer.
Sadly both my mum and aunt had breast cancer both had all the treatment that they could and still they lost their lives to this horrible disease and now I too have BC, I will ask question and be aware be informed, but I trust and put my faith in those on the front line .
GoodLuck with the outcome I hope for you that you are able to make the right informed decision.

[laura_c]

I agree with black swan. You are lucky with your diagnosis and fortunate that it was discovered through routine screening. I also feel fortunate that my DCIS was found by chance and due to the diligence of the radiographer. I have 14 years before id be offered routine screening but may not have been around!

[laura_c]

I dont think it would be wise to leave an invasive cancer. It should definately be treated. Who wants to take chances with something that has been caught early but is invasive and has the capacity to grow and spread?

DCIS can be left to monitoring depending on the grade of the disease and age of the patient.
I have been diagnosed with intermediate grade DCIS at the age of 36. I have 5 areas of it scattered around my right breast and facing a mastectomy. I have been told that if left long enough all DCIS will become invasive. Low grade may take 10-15 years, high grade 6months to a year and intermediate around 3/4 years. You never know what is going to flick the switch and when. A woman in her 70s may chose to have low grade monitored but a younger woman might not want to take a wait and see aporoach when they can be treated when the cancer is non invasive.
DCIS (ductal carcinoma in situ is cancer by definition and not a pre cancer). It is a contained cancer as occurs in the milk ducts and hasnt got the capability of spreading but as soon as it breaks through the milk ducts it is termed invasive cancer.
I am having a mastectomy on wednesday and have been told by 3 surgeons that this is necessary treatment. There is no way i would go down this route for no reason and do this blindly. I will have a sentinel node biospy and full pathology report to determine if there is any invasive cancer lurking amongst the DCIS. Early invasions can be found with DCIS.
My mum has suffered breast cancer twice (bilateral so two seperate incidences and not a recurrance). My grandmother also had breast cancer so I have a strong family history. I feel fortunate that i have been diagnosed at an early stage but am anxious about my final diagnosis until the full pathology report is available. To say you would not go near a breast surgeon if you had DCIS is an ignorant and insensitive statement to make. Maybe you should be careful about the sources of the publications you read and listen to the experts/reliable sources.

[BlackSwan]

Just to say that I agree with the responses here.
The trouble with newspaper articles is that journalists sometimes hype up apparent contraversies, take quotes out of context etc in order to sell papers.
Yes more research into which women are most at risk would help focus screening effects more effectively, but we aren't there yet (other than certain genetic types).
Screening saves many lives, but there is insufficient screening in the UK. Screening every 3 years means that if the tumour is too small to be detected at the time of screening, it can easy grow quite large (and spread into lymph nodes) in the interval between screens, which is what happened to me.
Annual screening would be mean that many more cancers would be found and treated early, with women having less agressive treatment and greater survival prospects.
You are so lucky that your cancer has been detected early due to screening, and I'm afraid that I am envious of your good fortune.

[chascat]

Is this the Scandinavian research you're referring too Elizabeth?
http://news.nationalpost.com/2011/12/13/some-breast-cancer-tumours-vanish-on-their-own-study-finds/
Please bear in mind that it is a small study and there will no doubt be many other studies that counter this one. IDC is invasive and until medical science is able to differentiate between those cancers that will spread and those that wont then we have very little choice in relation to treatments, it's all very well to say it will be monitored but that monitoring is a snapshot of one moment in time, in the blink of an eye it could have spread. I personally think you should be very glad for the screening and treatment that is available to all as this is all scientifically proven, this other study isn't.
I should also add please don't google or you'll be more confused than ever, stick with this site or Macmillan and put your trust in your medical team.

[Maryland]

Hi ElizabethD.....I would be very interested in a link to the research if you can post it please? My understanding, upon diagnosis last year was that if bc was invasive then the only way to determine accurately the grade and stage was after WLE/SNB when the path results were available and a treatment plan discussed and agreed. There is the potential, I guess to 'overtreat' by offering chemotherapy as a 'borderline' and leaving that decision to the individual, who in most cases want to 'throw everything at it' even though no-one knows if the bc will return or if the chemo will actually work. There are significant studies over 20 years that show WLE + radiotherapy has the same survival outcome as a mastectomy.

I agree that treatment is a very personal decision, and to some extent we have to put our faith in the trained professionals who care for us and trust them to support us making an informed decision. Some people with a small % improvement in their 5 or 10 year predicted survival rate will opt for everything; others will not.....an individual decision based on an individual diagnosis.

Life is about choice (or dilemmas!) and each of us has to live with the choices we make, informed or not..........

[CJM]

Hi, thank you all to date. But actually the Scandinavian research I was looking at specifically excluded DCIS, and looked at IDC overdiagnosis etc.etc. If I had DCIS, I wouldn't go near a bc surgeon, I would just ask for monitoring. It is different with IDC and the fact that it could potentially be so dangerous (but then again, may not be!!) is what has and is making my decisions so hard. And yes, Toniebelle, I could have chosen not to go for the mammogram, but the fact that the invitation comes with an appointment date does I think put pressure on women to go; I could only choose on the basis of the info I had at the time, which I don't think was balanced enough. I have unwittingly gone somewhere I might well have chosen not to go - or if I had chosen a mammogram in full possession of the info about harms as well as benefits, at least it would have been my informed choice.
I had not considered the possibilty (Lilac_Blue) that this experience might have brought underlying anger to the surface though. I don't like the idea, but I will bear that in mind.

[Lola65]

Until you have your WLE and SNB (and I do hope you go down this route) you will not know what your proper diagnosis is. The mammogram/ultrasound examinations are only indicators that there is a suspicious lump there. The initial core biopsy tells us a few other bits and bobs about it, but the pathologists need to look at the whole lump under microscope to determine exactly what it is, what size, what grade, and what the receptors might be. I do not consider any of this to be over-treatment. No-one can plan a treatment until all the information is known. If gathering this information requires surgery, then so be it. You say you are a grade 1, but please be aware this may change after your op as might the size.

I suggest you ask for a copy of your path reports. They will tell it all.

[Lilac_Blue]

I've not found much over treatment of BC in the UK yet it's fairly rampant in the US do to the cultural litigious mindset. As spoken above, it's DCIS that has women teetering on the fence regarding treatment. I'm a question authority type and I sought a 2nd opinion in another health trust. Taking that action created a much better consult and resulting treatment for me. I am an advocate for my own care and there is no treatment that can be performed without my informed consent. I hope you can find a clear way forward to fully restored health and also wanted to mention that (now) a year of weekly therapy helped me with my anger and a host of other emotions that came to the surface from this life changing disease.

[RevCat]

Hi Elizabeth, I am so sorry that you feel the information you have been given is inadequate or even incorrect in relation to over-diagnosis. As Tolliebelle says, the research relates to DCIS (sometimes even referred to as 'pre-cancer') which is contained within the ducts, not any other kind of breast cancer. There has been a lot about this in the press, but unless you were 'tuned in' to notice it it would be easily missed.

IDC, as it's name suggests, is invasive, and has spread beyond the ducts into the breast and has the potential to spread elsewhere if left untreated. Mammograms are only ever part of the picture - size, grade, location and node involvment (which can occur even with tiny tumours) all play a part in determining the best treatment path. Whilst it may be the case that small areas of DCIS could be monitored rather than removed, many women would prefer to have the DCIS removed and avoid the potential of chemo, rads and so on. At every stage there is the option to decline treamtent or to ask for a second opinion, most people simply accept the guidance of their consultants. As Tolliebelle notes, people are 'invited' to have a mammogram, not 'required' to, and I guess some people will opt out for all sorts of reasons.

As someone whose aggressive cancer was symptomatically detected because I was below screening age, I have strong views on this - frankly I'd rather risk being 'over treated' than have to face the uncertainty (and worse) that some of my bc friends do. I'm sorry if that sounds harsh, I do understand your need to express your anger, and am sure there will be others who share you viewpoint.

I hope you SNB comes back with clear nodes, and that the WLE gets clear margins, so that you can put all this behind you.

[Tolliebelle]

I thought that the research into over treatment was for DCIS which is non invasive cancer and therefore has only got the potential to spread put may not? IDC is invasive cancer and will spread if untreated? No one can be forced to have treatment surely you retain the right to turn it down or in fact not go for a mammogram in the first place if you choose not to. However if you make the choice to go and then something is found I would think the decision to make sure that you do everything you can so that it doesnt spread would be quite an easy one in my opinion!

[CJM]

Anybody else out there who has been diagnosed with IDC following routine mammogram (no symptoms) and has since discovered that overdiagnosis and therefor overtreatment are recognised by the medical community as potential harms of the screening programme? I am outraged that I did not know, and now find myself facing treatment for a condition that may not need it. Yes, there is research which suggest that some cancers will not grow and some may even disappear; and that bc mortality rates among the age-group of women who are screened are unchanged, though more women are diagnosed these days.And I'm not talking quacks here, but evidence-based research (the Cochrane Collaboration etc.)
I am probably going to have surgery (WLE and SNLB), but have found the decision-making really hard, as I'll probably never know if I really needed to have the treatment or not. It's a lot to go through for no reason, isn't it? And I am furious that I did not have balanced information when I was invited for the mammogram - so that I could choose whether it might be worth this stress or not.
The nurse at the bc care unit says she doesn't know of anybody else who feels like me. If you do, please get in touch.